Friday, April 30, 2010


Tonight will make shot number four.

So far it's been surprisingly hassle free. I don't have the constitution to jab myself yet, so Joe has done the last two nights and tonight I will use the auto-injector because I just can't bring myself to inject myself without getting light headed.

I feel like such a baby because rationally I *know* that the needle itself does not hurt, it's the medicine going in that hurts and that doesn't hurt until pretty much after everything is cleaned up.

It's so stupid of me to be afraid like that.

I'm thinking about going in for a shower, putting on my pjs and just getting the stuff out and trying to do it without thinking about it. I'm pretty sure it won't work like that because there's a fair bit of prep to do and that leaves me time to think.

I'm tired. Maybe I should just suck it up, do the shot and go to bed with a good book.

Wednesday, April 28, 2010


Today began with me having to face my own future.

Because people are assholes I have to travel by bus with a cane because I can't keep my balance standing up on a bus. (I also use a cane when I am going for either distance or speed because it helps my balance and that means I don't have to work as hard to walk) I sat in the first seat. It faces the wheelchair seat. Today the wheelchair seat was occupied by a woman in her late 50s/early 60s. I smiled at her when I sat down.

She said "You're so young to have a cane. You must have MS."

I admitted that I did and she said, "I went secondary progressive two years ago. I've been in the chair about 18 months." She went on to explain that she'd been diagnosed in the 90s and had been doing good for 15 years and then started going downhill and all the steroids and DMDs were powerless to stop it. She asked when I was diagnosed and when I told her she proclaimed that I was diagnosed at a "good time" because so much is changing.

Then we had to have the obligatory conversation about CCSVI and what we thought about it and weighing the pros and cons of going to Poland or Cuba or Italy to have the procedure done.

When all that was said and done we just sort of sat there looking at each other. She smiled at me, I smiled back. I realized that I must have a look of abject horror on my face because that is my MS nightmare.

(My full blown absolute terror is unending nerve pain, but the chair is right up there.)

I was also having some panic about starting Copaxone and really reevaluating why I was doing this, but I do know why now. It is very clear.

If 5 or 10 or 15 years from now I have a relapse that fully disables me I do not want to sit there thinking "What if I had done more?"

I couldn't live with that guilt knowing that I had options to put up a fight with this disease and I didn't take them. I've read the scientific literature and there's a track record with Copaxone after coming off Novantrone. There's a 15 year study showing that it does make a difference over longer periods of time.

MS doesn't come with a whole lot of options so I've got to take what I can of what's offered. When I get paid I'm walking down to Unity Yoga and asking if they'll teach someone who has to wear shoes (that has been a deal breaker for 4 other yoga studios). I'm walking every day. I'm watching what I eat and trying to manage my symptoms the best I can.

I also need to lose 30 lbs by the end of September because my cousin Angela is getting married and I am the hot sister.

My left arm has received its first shot. Its reaction is mild and it doesn't hurt. I'm just really aware of it in a way that I have never been aware of of my upper left arm before. Using the auto-injector made it really easy to get to the back of my arm and administer the shot. Tomorrow my left thigh will get the shot and I'm going to try it manually.

That should be, uh, something?

I think I am making the right decision. Joe's super supportive of the whole thing and sat through the nurse-led self-administered injection training with me. Francine was really nice and very patient.

I had convinced myself that it was really, really going to be a stabbing pain, but I didn't even feel the needle go in and thought for a moment or two that the auto-injector had misfired until I started feeling the drug coming into my arm. It was so not a big deal. I had convinced myself of much worse. Anticlimactic is probably an understatement.

I started out this day being really terrified of the future and its possibilities and I'm finishing this day feeling like I am taking an active part in trying to achieve the best future outcome that I can.

I don't like to think about tomorrow much, but tonight I'm pretty content with the choice I made today.

Tuesday, April 20, 2010


After 3 months, countless phone calls and cursing the very idea of 3rd party insurance, it finally happened.

Manufacturer's Suggested Retail Price = $1,410.40 per month.

Thankfully because of Joe's SFU health insurance I only had to pay $282.06, but that should have been less if the private company that administers the BC Fair Pharmacare program would stop believing that I live in Chiliwack. They can't seem to get it out of their computers that I have never been to Chiliwack, let alone would have enrolled in Fair Pharmacare from there. If I can get all of this sorted before my next prescription refill I will not have to pay another cent for any prescription until next year.

Tomorrow I call the Shared Solutions nurse to ask her to send someone over and teach me how to give myself subcutaneous injections. Joe's going to learn with me so we'll be watching the DVD that they sent me with my MS backpack. I'm sure it is riveting.

Should I take notes?

This has been a bureaucratic fucking nightmare for 3 months, mostly because no one who's used to only dealing with the government has ANY idea how to deal with a private company. The administration of Fair Pharmacare is done by a private US company and it shows. The special therapies Pharmacare program is administered by the Ministry of Health and that shows too.

But by this time next week, I should be a full time Copaxone user.

edit to mention: I got 490 Airmiles for this prescription. It costs just over 3000 for a single return ticket to Ottawa.

Sunday, April 18, 2010

This is not like me.

If you have known me for more than about 10 minutes in my so-called previous life, you will know that I love coffee.

It was the fuel to my flame, the energy in my sun, the valium to my mood disorder.

It was the nectar of the gods if I believed there were indeed gods.

All this has changed since my diagnosis because my wiring has been all screwed up.

Sometimes coffee really tastes bad to me. Doesn't matter how cheap or how expensive (but I can usually tolerate expensive for longer than cheap) it just tastes like bitter dish water.

I'm told that MS can be effecting either my sense of taste or smell thus making me think that I don't like coffee anymore. My caffeine intake has switched almost completely to CocaCola (and if anyone even suggests Diet Coke, please, die in a fire) and I'm wondering if that's part of the problem with my attempts to try and drop these 30 lbs I've gained since I stopped moving properly.

When I drank coffee I drank it black - no cream, no sugar. Now I'm drinking 200 calories at a time of Coke probably 3 or 4 times a day because I need the caffeine to control my fatigue.

(between the Coke and the Wellbutrin, I've only had mild bouts of fatigue that are solved by just sitting down and resting, not having to sleep. Though I do fall asleep pretty much every night by midnight if I stop drinking Coke after dinner.)

I know I love coffee and I know that this taste change is a result of my stupid brain. I poured myself a coffee about 15 minutes ago and added a brown sugar packet to it and now it's good. I don't know how long this will last, but I think I've found a way to switch up my Coke drinking for coffee.

MS sucks. Sometimes in the most stupid of ways.

Thursday, April 15, 2010


Today I broke a sweat at work. I was looking for a particular box in the office storage area but ended up having to move about 80% of the boxes to make sure that the one I was looking for wasn't there. It wasn't.

These boxes were heavy, but not irresponsible to lift heavy and I moved them all around with little difficulty. It was hot in the room as well, and other than a little pause to catch my breath because I'm woefully out of shape I did it all without getting exhausted.

Then I went up to my boss' office and purged the top of his desk of every useless printed email from 2009 and earlier (I found spam emails dating back to 2006). I have almost 1000 sheets of paper that can be printed on the other side, 3/4 full blue box and a full trash can of stuff that cannot be recycled or reused.

The cleaning makes me mentally feel better about my surroundings but the physical work from today makes me feel more confident in my body's ability to do its jobs. Sure I am not counting on it working well every minute of every day, but I have a little more confidence in my ability to do things that will help make me stronger and help me lose the 30 lbs I've put on since my legs started failing a year ago.

I've had Christina Aguilera singing in my head all day.

"Don't talk at me that way
Cos I ain't never gonna change
And if you're talking about my life
You're only wasting your own time"

I'm sassy today.

It feels a-MAY-Zing!

Tuesday, April 13, 2010


I am so disorganized these days and it makes me wonder if I am losing my mind. I haven't felt like torturing myself with further documentation that my life is incredibly uninteresting.

My life isn't incredibly complicated these days so it doesn't negatively impact my life in the form of missed deadlines or dropped balls. I think most of the time it is a reflection of how little I care about a lot of things.

I have strep throat. That sucks. 6.75 more days of penicillin and I should be right as rain. The clinic doctor I saw today sprayed my throat with some numbing stuff, wrote me a prescription and told me to gargle with salt water and drink lots of honey and lemon.

I will do that shortly.

I have to go to my MLA's office to complain about BC Pharmacare. This is the best thing about single payer health insurance; when something goes wrong it is someone who relies on the favour of the public to keep her/his job who has to try and rectify the situation.

The last time I had an issue with BC Med her constituency assistant got on the horn and had Joe an insurance card in 48 hours. Lets hope that Stewart or Joe (my MLA's assistants) can get some answers as to why BC Pharmacare thinks I live in Chiliwack.

I have never been to Chiliwack in my life, let alone lived on Garden Dr.

Also, the MS Walk in Vancouver is on April 25. That leaves me a little more than a week and a half to try to raise $75 more dollars so I can get the tote bag from one of the event sponsors.

Pledge me today if you can!